Guest guest Posted February 24, 2000 Report Share Posted February 24, 2000 In a message dated 2/24/00 8:57:39 PM Eastern Standard Time, brisajama@... writes: << I have also read in my patient manual about hair loss. Could any one out there tell me about that experience? I don't want to loose my hair; it is the only thing I've got going for me. >> Hi Jacki, Haven't been there yet, but from what I understand, the hairloss is a temporary thing that stops after the first 2 or 3 months. Not to worry, by that time you'll have a whole lot more going for you!!! {{HUGS}} " He who began a good work in you will be faithful to complete it even unto the day of Christ Jesus. " - Phil. 1:6 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 WOW Phyllis. You be sainted! Your kids with special needs AND PREGNANT! (I am such a whiner and I am going to stop now!!! I have one child that is 3 1/2 years - autistic, 1 NT daughter who is perfectly wonderful at 17 and a great husband. My hands are not as full as yours.) It is very hard to provide advise on your son . The only way I know about things is to document, document document!! Do you keep a journal on him? (I know, this is crazy to ask someone that has the load you have!) This may help track down what is causing your troubles. Email me off line for some ideas on this one. On DAN Dr.s - here is the list for your area: *** land *** Dana Godbout Laake, M.S. 11140 Rockville Pike #550 Rockville, MD 20852 ph: fax: Pamela J. Compart, M.D. Riverhill Wellness Center 6100 Day Long Lane, Ste. 207 sville, MD 21029 ph: fax: Arnold Brenner M.D. 5400 Old Ct. Td. Randallstown MD 21133 ph: fax: R. Chaffiotte, P.C., CCN 812 Tollhouse Ave. Frederick, MD 21701 ph: fax: In your spare time (ha ha ha) call them all and see if they will do a phone consult before you visit them. Some will. Write down all your questions ahead of time and go through the questions quickly. See which ones you " click " with before you take the time (and troop) to visit one. Take care of you too, A jeffs mom New to group Hello,all. I have recently bought a computer and have been just reading all the mail and trying to take it all in, and I've finally gotten up the nerve to write and join in on the conversations. I am a mother of three children (with a fourth on the way in Dec.), two of which have a diagnosis of PDD-NOS. The first is , now 9-years old, who has come so far that I am not sure she could qualify for such a diagnosis. (Incidently I have always believed that she had Landau-Kleffner Syndrome instead. Is there anyone out there with a child of such a diagnosis??) She is somewhat developmentally delayed in that she tends to socialize with children 1-2 years younger than herself, but other than that has only small traces of autistic-like behavior (low frustration level, hand-flapping when very excited). She also has learning disabilities (dyslexia, dyscalcula, etc.) I found the discussion on the medication, Bethanicol very interesting because was on this medication for gastric reflux for about 9 months --perhaps this has contributed to her recovery from autism??My six-year old, , is a different story. He is still not verbal except when he reads outloud to you (a splinter skill). We can sometimes push him and force him to answer yes/no questions or one word answers to routine questions ( " Do you want cinnamon toast or egg? " ). We have been doing as much ABA with him as possible for about three years, but he has never gotten the recommened amount because the school board refuses to pay for it, so it is just my husband and I and occassionally a volunteer or hired therapist, but we have difficulty affording very much of it. He is intermittenedly aggressive, even violent, both to people and objects. He destroys anything and everything eventually. He broke his bunk bed three times last night. He screams alot, cries alot and becomes obsessive/compulsive regarding certain phrases or words, sometimes made-up ones (the current one is " Comebort " , which he even spells on the chalkboard over and over.) Our third child, , 3-years old, probably would be diagnosed as ADHD if I bothered to get a diagnosis, but other than that completely normally developing. We stopped his vaccinations at 9 months, after we discovered that there might be a connection. ( Need I voice my opinion on it?!) We will not be getting the next one vaccinated at all. We have been on a GFCF diet since March and we got immediate improvement in 's eye-contact, connectedness and no longer had bowel accidents unless she goes off the diet. ( We are not as strict with her.) I have a few questions for you all- Regarding the vaccination issue, how do you guys refuse the vaccinations and still get them registered into schools, daycare, sports, etc? This has not really been an issue for us because I homeschool all of our children, but we were considering occassional daycare for . Does anyone know of a DAN doctor near the polis, MD area? We have recently seen a period of dramatic regression in skills, behavior, sleeping, -everything in even though we have kept him strictly on the diet. Could anyone comment on possible reasons for this and what I can do about this? HELP! HELP! HELP! I can really sympathize with the woman who seemed overwelmed by trying to do ABA and the diet on her own. We are also in the same boat. Throw in homeschooling them (and being pregnant with an umbilical hernia from lifting 50 lb. , to boot). I don't really mean to be complaining because I wouldn't trade with the typical American family for a minute, but it does become overwelming to do it all on your own. I apologize in advance for leaning on you guys too much for support, but to finally find people who speak my language is an answer to prayer! By-the-way, to answer the question about connections to Chronic Fatigue Syndrome, etc.: I was diagnosed with CFS but my symptoms mysteriously disappeared completely when I became pregnant with . Hmmmm...makes you think, huh? I believe that there are alot of related disorders -ADHD, dyslexia and other learning disabilities, CFS....the list goes on... any comments or helpful advice appreciated!! -Phyllis B. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 I agreee with that documentation is key to understanding slip-ups. For example, if your child behaves a certain way or if his/her bm's look a certain way when there is a known slip-up, then if these behaviors/bm's return seemingly on their own, you have good reason to believe that this was also a slip-up. Pat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 Betty in Central California New to group > Hello,all. I have recently bought a computer and have been just reading all the mail and trying to take it all in, and I've finally gotten up the nerve to write and join in on the conversations. > I am a mother of three children (with a fourth on the way in Dec.), two of which have a diagnosis of PDD-NOS. The first is , now 9-years old, who has come so far that I am not sure she could qualify for such a diagnosis. (Incidently I have always believed that she had Landau-Kleffner Syndrome instead. Is there anyone out there with a child of such a diagnosis??) She is somewhat developmentally delayed in that she tends to socialize with children 1-2 years younger than herself, but other than that has only small traces of autistic-like behavior (low frustration level, hand-flapping when very excited). She also has learning disabilities (dyslexia, dyscalcula, etc.) I found the discussion on the medication, Bethanicol very interesting because was on this medication for gastric reflux for about 9 months --perhaps this has contributed to her recovery from autism??My six-year old, , is a different story. He is still not verbal except when he reads outloud to you (a splinter skill). We can sometimes push him and force him to answer yes/no questions or one word answers to routine questions ( " Do you want cinnamon toast or egg? " ). We have been doing as much ABA with him as possible for about three years, but he has never gotten the recommened amount because the school board refuses to pay for it, so it is just my husband and I and occassionally a volunteer or hired therapist, but we have difficulty affording very much of it. He is intermittenedly aggressive, even violent, both to people and objects. He destroys anything and everything eventually. He broke his bunk bed three times last night. He screams alot, cries alot and becomes obsessive/compulsive regarding certain phrases or words, sometimes made-up ones (the current one is " Comebort " , which he even spells on the chalkboard over and over.) Our third child, , 3-years old, probably would be diagnosed as ADHD if I bothered to get a diagnosis, but other than that completely normally developing. We stopped his vaccinations at 9 months, after we discovered that there might be a connection. ( Need I voice my opinion on it?!) We will not be getting the next one vaccinated at all. We have been on a GFCF diet since March and we got immediate improvement in 's eye-contact, connectedness and no longer had bowel accidents unless she goes off the diet. ( We are not as strict with her.) > I have a few questions for you all- Regarding the vaccination issue, how do you guys refuse the vaccinations and still get them registered into schools, daycare, sports, etc? This has not really been an issue for us because I homeschool all of our children, but we were considering occassional daycare for . > Does anyone know of a DAN doctor near the polis, MD area? > We have recently seen a period of dramatic regression in skills, behavior, sleeping, -everything in even though we have kept him strictly on the diet. Could anyone comment on possible reasons for this and what I can do about this? HELP! HELP! HELP! > I can really sympathize with the woman who seemed overwelmed by trying to do ABA and the diet on her own. We are also in the same boat. Throw in homeschooling them (and being pregnant with an umbilical hernia from lifting 50 lb. , to boot). I don't really mean to be complaining because I wouldn't trade with the typical American family for a minute, but it does become overwelming to do it all on your own. I apologize in advance for leaning on you guys too much for support, but to finally find people who speak my language is an answer to prayer! > By-the-way, to answer the question about connections to Chronic Fatigue Syndrome, etc.: I was diagnosed with CFS but my symptoms mysteriously disappeared completely when I became pregnant with . Hmmmm...makes you think, huh? I believe that there are alot of related disorders -ADHD, dyslexia and other learning disabilities, CFS....the list goes on... any comments or helpful advice appreciated!! > -Phyllis B. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2000 Report Share Posted October 30, 2000 Phyllis: There's a DAN doctor in sville (near Columbia) and a couple in the Baltimore area. Dr. Pam Compart is the one in Columbia, which I considered using, but she accepts no insurance and wanted us to commit to 3 visits for (I believe) each of my 2 sons to the tune of $200 per visit. That was way more than I wanted to spend to have a doctor help us with the diet and supplements. There is also a Dr. Brenner in the Baltimore area and and Dr. Lahey or something like that in Towson. Dr. Brenner is the one that will accept my insurance, but I'm still waiting to talk to him since he's been out of town for several days, so I'm not sure he's willing to take us on as patients since I don't want to use him as my primary care doctor for my kids. I live in Silver Spring and he's way up in Randallstown and I only want a doctor for very special information. If I can help you further, please contact me privately. ( & Malachi's mom) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2001 Report Share Posted June 24, 2001 Bev thanks so much for your kind words. My primary care doctor would not send me to another doctor or hospital to see what my real problem was until I had lost use of both feet and lost bowel and bladder control when he finally did I had to have emerengency surgery because the bone had collasped around my spine. I had to have three surgerys within two weeks. I spent from Sept. 19 to Nov. 20th in the hospital and rehab. I still have no control of my right foot ,Semi feeling in the left foot,( I can only wiggle three toes on that foot) ,but not enough to control it. Still do not have any bowel or bladder control. I have to wear braces on both feet up to my knees to have any control of my feet. I " ve talked to alot of lawyers and they say I have a good case but it will take years to get anything done they said it could take up to 10 to 15 years because the doctor could drag it out that long. Even though the nerosurgeon that did my surgerys said that if I could have gotten to him sooner that I wouldn't be having this problem.I blame alot of this on my insurance company also. But enough about me. We live in Alabama and goes to Childerns Hospital of Alabama in Birmingham Alabama. She has been going there since birth. Her CF team is wonderful. Her doctor is Doctor Lyrene. I wouldn't want to trade her CF team or Dr. Lyrene for anything, they have been with her since birth and I believe they are why she is doing so well today. As for 's father He's a big disapointment. We haven't seen him in 4 years. He saw her once in the hospital when she was 2 days old and said he couldn't handle the fact that she was sick so he took the cowards way out. He left and hasn't been back since. But then again he's not welcome back. Thanks for letting me bend your ear. Sincerely, Kathy--- In cfparents@y..., " bev " <bevd@h...> wrote: > > > How hard this is for you. I am soooo sorry this has all happened. How did > the > doctor's negligence cause your inability to walk again....? Is there any > legal > recourse for you to at least have him/her bear the expense of additional > help. > How long will your mom be able to continue .Bless her heart .It is > wonderful > she is there for you & your precious wee one. I do hope your 's > dad > does help some. > YES, You are right about the list group. There are several /many single > parents > with children with CF. Some have CF themselves ....some have more than 2 > children with CF as well,- sooo you will have many that will be a comfort > to you > as you will be to them.. > You said it....been there done that kind of help.!! it is very hard for > those who are > not in your shoes to understand completely BUT -those on these lists have & > do. That's real support. WE WELCOME you with open arms & hearts. > What CF center do you go to? Where do you live?-Maybe someone on list lives > near you. I will look forward to seeing you post again. > I am a grandmom of a 16++ year old gal who has CF and am a patients > advocate. > I also do a newsletter the INFORMER..Not a fancy one as so many are , but > it is full > of " STUFF " .kinda like a folksy note (16 pages tho):):)There is no > charge ,but-----I > do need your snail mail address. > > LOVE & HUGS, > GrandmomBEV > > > > New to group > > > My name is Kathy and I am a single mother of two. My oldest son is 22 > years old and as healthy as a horse. My youngest daughter is 4 years > old and has CF. She was diagnosed at birth. I am divorced so they > have different fathers. I didn't know anything about CF until > was born. I have learned a lot since. Everyday has been a > learning experience. I know it's hard when both parents are there > through the bad times, but be very thankful that your not alone. I > have never been in a discussion or support group. I have always > needed one though.Every parent going through this needs a support > group,and who better than other parents going through the same thing. > is doing fine right now. She has only been in the hospital > twice since she was born. Once for 2 weeks next for 30 days. I was > told from day one that she would only do as well as I kept her. I > believe in her wearing her mask at approiate times. She understands > that this protects other CF kids not just her. This past year has > been extermely hard for us because I have been wheelchair bound due > to Doctor negelience. Looks like it's going to be permanent. So its > been a laerning experience for us all. Thank goodness for my mother > because she takes care of me and helps me with . So now you > can see why I need a support group.Thanks for listening to me ramble > on,I hope I didn't bore you to tears. If there is anything you'd like > to know from me just let me know. P.S. sorry about the spelling I > was in a hurry. > > > > PLEASE do not post religious emails to the list. > > > ------------------------------------------- > > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2001 Report Share Posted June 24, 2001 Bev thanks so much for your kind words. My primary care doctor would not send me to another doctor or hospital to see what my real problem was until I had lost use of both feet and lost bowel and bladder control when he finally did I had to have emerengency surgery because the bone had collasped around my spine. I had to have three surgerys within two weeks. I spent from Sept. 19 to Nov. 20th in the hospital and rehab. I still have no control of my right foot ,Semi feeling in the left foot,( I can only wiggle three toes on that foot) ,but not enough to control it. Still do not have any bowel or bladder control. I have to wear braces on both feet up to my knees to have any control of my feet. I " ve talked to alot of lawyers and they say I have a good case but it will take years to get anything done they said it could take up to 10 to 15 years because the doctor could drag it out that long. Even though the nerosurgeon that did my surgerys said that if I could have gotten to him sooner that I wouldn't be having this problem.I blame alot of this on my insurance company also. But enough about me. We live in Alabama and goes to Childerns Hospital of Alabama in Birmingham Alabama. She has been going there since birth. Her CF team is wonderful. Her doctor is Doctor Lyrene. I wouldn't want to trade her CF team or Dr. Lyrene for anything, they have been with her since birth and I believe they are why she is doing so well today. As for 's father He's a big disapointment. We haven't seen him in 4 years. He saw her once in the hospital when she was 2 days old and said he couldn't handle the fact that she was sick so he took the cowards way out. He left and hasn't been back since. But then again he's not welcome back. Thanks for letting me bend your ear. Sincerely, Kathy--- In cfparents@y..., " bev " <bevd@h...> wrote: > > > How hard this is for you. I am soooo sorry this has all happened. How did > the > doctor's negligence cause your inability to walk again....? Is there any > legal > recourse for you to at least have him/her bear the expense of additional > help. > How long will your mom be able to continue .Bless her heart .It is > wonderful > she is there for you & your precious wee one. I do hope your 's > dad > does help some. > YES, You are right about the list group. There are several /many single > parents > with children with CF. Some have CF themselves ....some have more than 2 > children with CF as well,- sooo you will have many that will be a comfort > to you > as you will be to them.. > You said it....been there done that kind of help.!! it is very hard for > those who are > not in your shoes to understand completely BUT -those on these lists have & > do. That's real support. WE WELCOME you with open arms & hearts. > What CF center do you go to? Where do you live?-Maybe someone on list lives > near you. I will look forward to seeing you post again. > I am a grandmom of a 16++ year old gal who has CF and am a patients > advocate. > I also do a newsletter the INFORMER..Not a fancy one as so many are , but > it is full > of " STUFF " .kinda like a folksy note (16 pages tho):):)There is no > charge ,but-----I > do need your snail mail address. > > LOVE & HUGS, > GrandmomBEV > > > > New to group > > > My name is Kathy and I am a single mother of two. My oldest son is 22 > years old and as healthy as a horse. My youngest daughter is 4 years > old and has CF. She was diagnosed at birth. I am divorced so they > have different fathers. I didn't know anything about CF until > was born. I have learned a lot since. Everyday has been a > learning experience. I know it's hard when both parents are there > through the bad times, but be very thankful that your not alone. I > have never been in a discussion or support group. I have always > needed one though.Every parent going through this needs a support > group,and who better than other parents going through the same thing. > is doing fine right now. She has only been in the hospital > twice since she was born. Once for 2 weeks next for 30 days. I was > told from day one that she would only do as well as I kept her. I > believe in her wearing her mask at approiate times. She understands > that this protects other CF kids not just her. This past year has > been extermely hard for us because I have been wheelchair bound due > to Doctor negelience. Looks like it's going to be permanent. So its > been a laerning experience for us all. Thank goodness for my mother > because she takes care of me and helps me with . So now you > can see why I need a support group.Thanks for listening to me ramble > on,I hope I didn't bore you to tears. If there is anything you'd like > to know from me just let me know. P.S. sorry about the spelling I > was in a hurry. > > > > PLEASE do not post religious emails to the list. > > > ------------------------------------------- > > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2001 Report Share Posted June 24, 2001 Oh dear Kathy, I am soo very sorry all has turned out this way for you. Yes, I know your DOC...The whole team there is great!!. You should write your congressman and tell how your HMO doc wouldn't refer you and you don't have the $$$ to sue. Would he/she help you. EXPLAIN about your hubby /father of your dear is a dead beat dad. Believe me, this is one they would love to hear about. So would the WANTED TV show....or /and the INQUIRER mag. (yes that one) BUT , they do get the law after the " dads and make them pay. They do it quietly as well. YOUR case should be handled and you shouldn't have to pay a dime. Rehab might help BUT , it is also expensive. Please don't let the one lawyer slow you down. Life is a long time............Bless you . Call, write any time. 1- toll free. bevd@... list. Also other list like : cysticfibrosis@... & CYSTIC-L@... are many ways to get great info .Many of these folks are on all these lists. It is wonderful. take care. LOVE & HUGS, grandmomBEV New to group > > > My name is Kathy and I am a single mother of two. My oldest son is 22 > years old and as healthy as a horse. My youngest daughter is 4 years > old and has CF. She was diagnosed at birth. I am divorced so they > have different fathers. I didn't know anything about CF until > was born. I have learned a lot since. Everyday has been a > learning experience. I know it's hard when both parents are there > through the bad times, but be very thankful that your not alone. I > have never been in a discussion or support group. I have always > needed one though.Every parent going through this needs a support > group,and who better than other parents going through the same thing. > is doing fine right now. She has only been in the hospital > twice since she was born. Once for 2 weeks next for 30 days. I was > told from day one that she would only do as well as I kept her. I > believe in her wearing her mask at approiate times. She understands > that this protects other CF kids not just her. This past year has > been extermely hard for us because I have been wheelchair bound due > to Doctor negelience. Looks like it's going to be permanent. So its > been a laerning experience for us all. Thank goodness for my mother > because she takes care of me and helps me with . So now you > can see why I need a support group.Thanks for listening to me ramble > on,I hope I didn't bore you to tears. If there is anything you'd like > to know from me just let me know. P.S. sorry about the spelling I > was in a hurry. > > > > PLEASE do not post religious emails to the list. > > > ------------------------------------------- > > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2001 Report Share Posted June 24, 2001 Oh dear Kathy, I am soo very sorry all has turned out this way for you. Yes, I know your DOC...The whole team there is great!!. You should write your congressman and tell how your HMO doc wouldn't refer you and you don't have the $$$ to sue. Would he/she help you. EXPLAIN about your hubby /father of your dear is a dead beat dad. Believe me, this is one they would love to hear about. So would the WANTED TV show....or /and the INQUIRER mag. (yes that one) BUT , they do get the law after the " dads and make them pay. They do it quietly as well. YOUR case should be handled and you shouldn't have to pay a dime. Rehab might help BUT , it is also expensive. Please don't let the one lawyer slow you down. Life is a long time............Bless you . Call, write any time. 1- toll free. bevd@... list. Also other list like : cysticfibrosis@... & CYSTIC-L@... are many ways to get great info .Many of these folks are on all these lists. It is wonderful. take care. LOVE & HUGS, grandmomBEV New to group > > > My name is Kathy and I am a single mother of two. My oldest son is 22 > years old and as healthy as a horse. My youngest daughter is 4 years > old and has CF. She was diagnosed at birth. I am divorced so they > have different fathers. I didn't know anything about CF until > was born. I have learned a lot since. Everyday has been a > learning experience. I know it's hard when both parents are there > through the bad times, but be very thankful that your not alone. I > have never been in a discussion or support group. I have always > needed one though.Every parent going through this needs a support > group,and who better than other parents going through the same thing. > is doing fine right now. She has only been in the hospital > twice since she was born. Once for 2 weeks next for 30 days. I was > told from day one that she would only do as well as I kept her. I > believe in her wearing her mask at approiate times. She understands > that this protects other CF kids not just her. This past year has > been extermely hard for us because I have been wheelchair bound due > to Doctor negelience. Looks like it's going to be permanent. So its > been a laerning experience for us all. Thank goodness for my mother > because she takes care of me and helps me with . So now you > can see why I need a support group.Thanks for listening to me ramble > on,I hope I didn't bore you to tears. If there is anything you'd like > to know from me just let me know. P.S. sorry about the spelling I > was in a hurry. > > > > PLEASE do not post religious emails to the list. > > > ------------------------------------------- > > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2001 Report Share Posted June 24, 2001 Oh dear Kathy, I am soo very sorry all has turned out this way for you. Yes, I know your DOC...The whole team there is great!!. You should write your congressman and tell how your HMO doc wouldn't refer you and you don't have the $$$ to sue. Would he/she help you. EXPLAIN about your hubby /father of your dear is a dead beat dad. Believe me, this is one they would love to hear about. So would the WANTED TV show....or /and the INQUIRER mag. (yes that one) BUT , they do get the law after the " dads and make them pay. They do it quietly as well. YOUR case should be handled and you shouldn't have to pay a dime. Rehab might help BUT , it is also expensive. Please don't let the one lawyer slow you down. Life is a long time............Bless you . Call, write any time. 1- toll free. bevd@... list. Also other list like : cysticfibrosis@... & CYSTIC-L@... are many ways to get great info .Many of these folks are on all these lists. It is wonderful. take care. LOVE & HUGS, grandmomBEV New to group > > > My name is Kathy and I am a single mother of two. My oldest son is 22 > years old and as healthy as a horse. My youngest daughter is 4 years > old and has CF. She was diagnosed at birth. I am divorced so they > have different fathers. I didn't know anything about CF until > was born. I have learned a lot since. Everyday has been a > learning experience. I know it's hard when both parents are there > through the bad times, but be very thankful that your not alone. I > have never been in a discussion or support group. I have always > needed one though.Every parent going through this needs a support > group,and who better than other parents going through the same thing. > is doing fine right now. She has only been in the hospital > twice since she was born. Once for 2 weeks next for 30 days. I was > told from day one that she would only do as well as I kept her. I > believe in her wearing her mask at approiate times. She understands > that this protects other CF kids not just her. This past year has > been extermely hard for us because I have been wheelchair bound due > to Doctor negelience. Looks like it's going to be permanent. So its > been a laerning experience for us all. Thank goodness for my mother > because she takes care of me and helps me with . So now you > can see why I need a support group.Thanks for listening to me ramble > on,I hope I didn't bore you to tears. If there is anything you'd like > to know from me just let me know. P.S. sorry about the spelling I > was in a hurry. > > > > PLEASE do not post religious emails to the list. > > > ------------------------------------------- > > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2001 Report Share Posted June 25, 2001 Hi Bev, I have just sat down to check my email and found yours. Thanks so much for your kind words. Believe me I do not feel sorry for myself by any means, cause I now there are people out there alot worse off than and I. Believe me I have ventured down every avenue available to me. but I like all the new ideas I haven't tried. You never know what might work. I " ll write again soon I.ve got to go and give her meds. Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2001 Report Share Posted June 25, 2001 Hi Bev, I have just sat down to check my email and found yours. Thanks so much for your kind words. Believe me I do not feel sorry for myself by any means, cause I now there are people out there alot worse off than and I. Believe me I have ventured down every avenue available to me. but I like all the new ideas I haven't tried. You never know what might work. I " ll write again soon I.ve got to go and give her meds. Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2001 Report Share Posted August 8, 2001 Hello Debbie: Wow! Anothere Debbie! How cool! We have several Debbie's now. Its kinda fun trying to figure out who is who! lol Please, can you tell us where you are from, that way we can kinda figure out who's-who by that. Thanks. Seriously though, I'm so glad you have found us! Welcome! I'm so sorry to hear your story about the hereditary pancreatitis part. That is so sad that so many people in your family carry that gene! I hope you find this place as supportive as I have. These people here are so smart! I honestly think they know more than the doc's do! About the pain meds question.........I took vicodin for about 6 years, and it really wasn't helping much, but my docs were afraid to give me anything else. So, in March the specialist I see at IU sent me home with MS contin (morphine sulfate continous) & MSIR (morphine sulfate instant release). And these meds are helping me so much & I wish they had changed me before this. I hope this helps. Please keep me posted! Lots of Hugs & Love, ~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~* Lawson (Soon to be Krupp again!) Liamhoha20@... Pancreatitis Association Int'l Ohio State Chapter Rep. ~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~* > I'm glad to have found this group. Was wondering how many others have been > diagnosed with hereditary pancreatitis? I have had pancreatitis when pregnant > with my kids and then had it in 1997 and had a pseudocyst and had to have a > partial pancreatectomy. My sister has chronic pancreatitis and my Mom has had > pancreatitis. This past May my 9 year old daughter was hospitalized with > pancreatitis and they tested her for hereditary pancreatitis gene mutation > which came back positive. So my youngest daughter (who has never had stomach > problems) my Mom and sister and I were all tested. We all came back that we > had the mutation. I have been very upset that my youngest also has the > mutation. I have had pain since my surgery, but not severe and always > dismissed it as something else because my surgeon told me I was fixed. Has > anyone ever had pain that seems mostly in the back radiating through that > isn't made worse by eating? I'm so sorry that so many of you are suffering. > My sister that has chronic pancreatitis only was given percocet for pain. Was > wondering if any of you have found other medications that work better so she > can maybe get some relief. Thanks Debbie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2001 Report Share Posted August 27, 2001 Greetings! You wondered: > My uncle was been diagnosed with Shy-Drager and > I was wondering about heredity factors So far, doctors have not been able to find ANY hereditary links. There is a slightly elevated chance that someone with MSA has a relative with Parkinson's Disease. But the reverse is NOT true. If you family does see some sort of hereditary link, you really should explore the hereditary ataxias (SpinoCerebellar Ataxias). Regards, =jbf= B. Fisher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2002 Report Share Posted May 8, 2002 wow u really do have ur hands full. ur son has traits i haven't even heard off with this syndrom. where are u from? we are from philadelphia and my daughter goes to childrens hospital of philadelphia. i am unable to go to the convention god seems to be throwing our family a lot of curves my daughter is getting a g-tube and just went through a few heart tests and we had a bit of a scare and to top it off my husband lost his job. so finances aren't really doing so well and the convention is a real expense. This group has been very helpfull and full of advise and information. so i hope u get all ur questions answered and keep me posted. chrissy mom of Madison 8 1/2 months 10 lbs stretch200011 wrote: I have just joined this support group. Hopefully this is not too long. My son born via c-section six weeks early. He was 2lbs 3ozs and 14 1/4 inches long at birth. He was on a resporator - non oxygenated - for about 8 hours and then was removed. Initial visual check of him revieled the webbed feet and a dual thumb on his left hand. During his stay at the hospital it was a constant concern about his inability to gain weight. There was also a concern about his head because part of his head above his eyebrows looked odd. They did 7 sonogram of his head during his six week stay at the hospital. The doctors just knew he had water on the brain. Christmas eve of 200 we were told to come to the hospital quickly as they did not think he would survive because of it. It turned out to be a false alarm. What a merry x-mas that was. They also did a chromosome test and it came back aokay. Before he left the hospital a hearing test was done. He has profound hearing loss in his left ear and has mild hearing loss in his right. When he left the hospital he was only 3lbs 8 ozs. Considering the highs and lows and the gloom and doom given to us at his birth I felt if hearing loss and the extra thumb was all I had to worry about I thought we were doing fine. Over the next seven months the doctor would prescribe 7 more sonograms of his head. His head kept getting wider and flatter. It wasn't until we pulled a doctor in and said look, that it was decided maybe we should exray. An ex-ray was done. The doctor called and told me they had found wormian bones in his scull. This was a red flag that there was something wrong with our son. Wormian bones do not appear independently. They are only associated with a syndrome. In August, to correct his mishapen head, he began to wear a shaping helmet. Thank God! He had begun to look like some star trek alien. His head was wide and large with a little face. He just got it off 2 weeks ago. He is beautiful. Anyway the wormian bones were the beginning. 11 months later and living through a geneticist that absolutly failed us. Ian has been tentively diagnosed with RSS. Unfortunately the doctors have braced us as it looks like he may have a severe case. He has many structural abnormalities that are currently visible through exray. The unfortunate thing is all this does not explain the wormian bones the extra thumb, the deafness and I forgot - his extreme farsightedness. We still have a long way to go. I am glad I found this group. We visit s Hopkins University Hospital on May 13. They are going to do a more detailed genetic work up, an MRI and we will be seeing an endocronogist. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2002 Report Share Posted May 8, 2002 Hi, Wow - you must be so overwhelmed. The good news is that you found a great place to network and share info, feelings, etc. This is really quite a great group of people. I have 4-year-old triplets, Jen, , and . is my RSS son born at 34 weeks at 1.13 oz. and 14-1/2 " . He has what I would consider a severe case of RSS as well, but not to the extent of your son. is profoundly deaf in both ears (not related to RSS and we don't know where the deafness comes from), has severe congenital scoliosis which just required back surgery (spinal fusion) and 4 months in a body cast. He has other smaller issues, but his RSS, scolio, and deafness keep us hoppin. He goes have a g-tube to help with the feedings, a cochlear implant to help with the hearing, and now the back is mending while being in a brace. Are you looking to do anything about his hearing or is he already being aided? A Cochlear Implant suppose to allow deaf kids to hear, but unfortunately my son (nothings ever easy with him) doesn't get much benefit with his. So, we rely more on sign language as his primary language. Well, just wanted to write and let you know you're not alone in this venture. We are hear to support any way we can. We live in CT and seek most of our services in CT, Boston, and NY. Cheryl Mom to Jen, , and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2002 Report Share Posted May 11, 2002 Welcome to the group, You can learn a lot here. I wish you all a lot of strenght with everything. And for the rest don't forget to enjoy your son. Heleen Greeve --- stretch200011 wrote: > I have just joined this support group. Hopefully > this is not too long. > > My son born via c-section six weeks early. He was > 2lbs 3ozs and 14 > 1/4 inches long at birth. He was on a resporator - > non oxygenated - > for about 8 hours and then was removed. Initial > visual check of him > revieled the webbed feet and a dual thumb on his > left hand. > > During his stay at the hospital it was a constant > concern about his > inability to gain weight. There was also a concern > about his head > because part of his head above his eyebrows looked > odd. They did 7 > sonogram of his head during his six week stay at the > hospital. The > doctors just knew he had water on the brain. > Christmas eve of 200 we > were told to come to the hospital quickly as they > did not think he > would survive because of it. It turned out to be a > false alarm. > What a merry x-mas that was. > > They also did a chromosome test and it came back > aokay. > > Before he left the hospital a hearing test was done. > He has profound > hearing loss in his left ear and has mild hearing > loss in his right. > When he left the hospital he was only 3lbs 8 ozs. > Considering the > highs and lows and the gloom and doom given to us at > his birth I felt > if hearing loss and the extra thumb was all I had to > worry about I > thought we were doing fine. > > Over the next seven months the doctor would > prescribe 7 more > sonograms of his head. His head kept getting wider > and flatter. It > wasn't until we pulled a doctor in and said look, > that it was decided > maybe we should exray. An ex-ray was done. The > doctor called and > told me they had found wormian bones in his scull. > This was a red > flag that there was something wrong with our son. > Wormian bones do > not appear independently. They are only associated > with a syndrome. > > In August, to correct his mishapen head, he began to > wear a shaping > helmet. Thank God! He had begun to look like some > star trek alien. > His head was wide and large with a little face. He > just got it off 2 > weeks ago. He is beautiful. > > Anyway the wormian bones were the beginning. 11 > months later and > living through a geneticist that absolutly failed > us. Ian has been > tentively diagnosed with RSS. Unfortunately the > doctors have braced > us as it looks like he may have a severe case. He > has many > structural abnormalities that are currently visible > through exray. > > The unfortunate thing is all this does not explain > the wormian bones > the extra thumb, the deafness and I forgot - his > extreme > farsightedness. > > We still have a long way to go. I am glad I found > this group. > > We visit s Hopkins University Hospital on May > 13. They are going > to do a more detailed genetic work up, an MRI and we > will be seeing > an endocronogist. > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2002 Report Share Posted September 9, 2002 Jill My son has COX (Complex 4), as well as Complex 1 and 1+3 and 2+3...basically all over the place. He began showing symptoms when he was 5 and turned 6 in July. He was diagnosed in June via a muscle biopsy by Dr Shoffner and we got to see Dr Korson in Boston for patient care. We are still new and learning and my son has his brain, muscles, nerves, lungs, kidneys, liver/gut, blood and eyes affected. Feel free to ask us any questions...it takes quite a while to learn all the lingo and get familiar with things but even after being on the list for eight months, there is something new to learn every day! glad you found us! deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2002 Report Share Posted September 9, 2002 Jill My son has COX (Complex 4), as well as Complex 1 and 1+3 and 2+3...basically all over the place. He began showing symptoms when he was 5 and turned 6 in July. He was diagnosed in June via a muscle biopsy by Dr Shoffner and we got to see Dr Korson in Boston for patient care. We are still new and learning and my son has his brain, muscles, nerves, lungs, kidneys, liver/gut, blood and eyes affected. Feel free to ask us any questions...it takes quite a while to learn all the lingo and get familiar with things but even after being on the list for eight months, there is something new to learn every day! glad you found us! deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2002 Report Share Posted September 9, 2002 Jill, My daughter who will be six in December. She has also been diagnosed with complex IV in June of 2001. She had a muscle biopsy to confirm it. I do have two older children ( 12 and 9) and both are unaffected and healthy) Miranda had problems pretty much right from birth on. Mainly respratory. She started tube feeding at 13 months due to failure to thrive. Like your daughter, she can walk and run, but tires easily and is often sick. She has had 2 nissens done for reflux and aspiration. Developmentally she is somewhat delayed but we are hoping things will soon even out for her. She started in school this year in a learning support kindergarten class. She is still 100% tube fed, as she really has no intrest in eating. Welcome to the group. New to group Hi all~Just wanted to introduce myself and my family. I am looking forward tolearning more about all of you. I have two children who are potentiallyaffected with a mito disease called cytochrome c-oxidase deficiency. Potentially because after their muscle biopsies, they met most of thecriteria for that disease. , is 4 and will be 5 in earlyOctober. She was born with extremely low tone and we first realizedsomething was wrong when she was unable to suck. To date, she is still alittle pumpkin. 28 pounds at almost 5. She was g-tube fed until around3 and we pulled it when she was about 3 1/2. We wanted to get through thewinter in case she became sick so we could have an easy means ofhydrating her without ending up in the hospital. has nowexceeded our wildest expectations. She can walk, run, etc, all ofcourse with an extremely wobbly gait, but it is there. Currently wedon't anticipate any learning problems, except for maybe some potentialfor some hyperactivity issues...but that's more of my issue than any oneelses. She is very independent and strong-willed. Her biggest issue isher speech. It is so difficult to understand and sounds sogarbled...especially when tired. I feel sorry for her and it breaks myheart when her own peers can't understand her. Our middle child, whojust turned 3, is unaffected. After many debates, we decided to have onemore child. The Dr.'s told us this disease is so rare, and because wedon't have a definite diagnosis, it is highly unlikely to have anotherchild with this disease. Low and behold, joined our family lastNovember...around 9 months ago. During the pregnancy, I continuedtelling anyone who would listen that I thought that this baby didn't seemright. Movement was nothing like Alyssa, our unaffected child, andreminded me of my pregnancy with . After my ob. telling me I worrytoo much (a different ob. than who had delivered and Alyssa...wehad moved from the town they were born in), I finally convinced him thatI wanted to see a high-risk specialist in a hospital with a NICU. So, Idid...thank goodness. When was born the neonatologist was thereduring delivery, and thought things looked great. However, everythingwent down hill from there. After trying to get to latch on allnight, by the next afternoon the pediatrician had agreed with me thatthere was a problem, so off to NICU. Anyway, after demanding to seeother specialist, was able to come home the day after me. He is notdoing as well as his sister did. While seeming to have better tone thanhis sister, he is not progressing as well at all. About 6 weeks ago, hehad his first seizure, which never had and I thought that I waslosing him for sure. He is now rolling over, but not nearly ready tosit, has no interest in food, refluxes through his nissan, and basicallyit just breaks my heart. Last week we drove to see 's oldtherapist just to get her input on the situation...she didn't say much,except she doesn't remember 's arms being so atrophied, but hislegs are stronger than hers. currently has therapy 3 days a weekand we will see 's old therapist quarterly. She's excellent, hasbeen in the profession for years, and has experience that our currenttherapist doesn't have...she's just too far for me to see her on a weeklybasis.Anyway, looking forward to being part of the group. Sorry for this longinto letter.Jill (mom to 4 1/2, 9 months, cytochrome c-oxidasedeficiency)Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2002 Report Share Posted September 9, 2002 Jill, My daughter who will be six in December. She has also been diagnosed with complex IV in June of 2001. She had a muscle biopsy to confirm it. I do have two older children ( 12 and 9) and both are unaffected and healthy) Miranda had problems pretty much right from birth on. Mainly respratory. She started tube feeding at 13 months due to failure to thrive. Like your daughter, she can walk and run, but tires easily and is often sick. She has had 2 nissens done for reflux and aspiration. Developmentally she is somewhat delayed but we are hoping things will soon even out for her. She started in school this year in a learning support kindergarten class. She is still 100% tube fed, as she really has no intrest in eating. Welcome to the group. New to group Hi all~Just wanted to introduce myself and my family. I am looking forward tolearning more about all of you. I have two children who are potentiallyaffected with a mito disease called cytochrome c-oxidase deficiency. Potentially because after their muscle biopsies, they met most of thecriteria for that disease. , is 4 and will be 5 in earlyOctober. She was born with extremely low tone and we first realizedsomething was wrong when she was unable to suck. To date, she is still alittle pumpkin. 28 pounds at almost 5. She was g-tube fed until around3 and we pulled it when she was about 3 1/2. We wanted to get through thewinter in case she became sick so we could have an easy means ofhydrating her without ending up in the hospital. has nowexceeded our wildest expectations. She can walk, run, etc, all ofcourse with an extremely wobbly gait, but it is there. Currently wedon't anticipate any learning problems, except for maybe some potentialfor some hyperactivity issues...but that's more of my issue than any oneelses. She is very independent and strong-willed. Her biggest issue isher speech. It is so difficult to understand and sounds sogarbled...especially when tired. I feel sorry for her and it breaks myheart when her own peers can't understand her. Our middle child, whojust turned 3, is unaffected. After many debates, we decided to have onemore child. The Dr.'s told us this disease is so rare, and because wedon't have a definite diagnosis, it is highly unlikely to have anotherchild with this disease. Low and behold, joined our family lastNovember...around 9 months ago. During the pregnancy, I continuedtelling anyone who would listen that I thought that this baby didn't seemright. Movement was nothing like Alyssa, our unaffected child, andreminded me of my pregnancy with . After my ob. telling me I worrytoo much (a different ob. than who had delivered and Alyssa...wehad moved from the town they were born in), I finally convinced him thatI wanted to see a high-risk specialist in a hospital with a NICU. So, Idid...thank goodness. When was born the neonatologist was thereduring delivery, and thought things looked great. However, everythingwent down hill from there. After trying to get to latch on allnight, by the next afternoon the pediatrician had agreed with me thatthere was a problem, so off to NICU. Anyway, after demanding to seeother specialist, was able to come home the day after me. He is notdoing as well as his sister did. While seeming to have better tone thanhis sister, he is not progressing as well at all. About 6 weeks ago, hehad his first seizure, which never had and I thought that I waslosing him for sure. He is now rolling over, but not nearly ready tosit, has no interest in food, refluxes through his nissan, and basicallyit just breaks my heart. Last week we drove to see 's oldtherapist just to get her input on the situation...she didn't say much,except she doesn't remember 's arms being so atrophied, but hislegs are stronger than hers. currently has therapy 3 days a weekand we will see 's old therapist quarterly. She's excellent, hasbeen in the profession for years, and has experience that our currenttherapist doesn't have...she's just too far for me to see her on a weeklybasis.Anyway, looking forward to being part of the group. Sorry for this longinto letter.Jill (mom to 4 1/2, 9 months, cytochrome c-oxidasedeficiency)Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2002 Report Share Posted September 9, 2002 Hi Jill: Many things in your post hit me as sounding familiar from my own experiences. I have 4 kids and my 2nd, Zach who is now 10 was the first that I knew to be affected. But like , he seemed to improve with age in some important ways like cognitive function and development. 13 months after he was born my daughter was born. No one had a name for what was wrong and by the time Zach was 4 he seemed to be getting better. The doctors also told us that they doubted it was anything that would show up in a subsequent pregnancy, after all only Zach was affected and not my 2 girls. So Sammy was born and he turned 5 now in May. The sound of familiar footsteps???Yes, I too knew within hours of Sam's birth that he was not well. And from the time he was about 5 weeks old he accumulated symptoms that were more pronounced than Zach's had been at the same age. I learned that my heart could break more times than I thought possible. At the same time, Zach started getting worse - mainly adding newer medical problems. When Sam was 15 months old and Zach was 6 they were diagnosed with the same as your kids (complex 4) but also with complex 1. There complex 1 and 4 are profoundly low. Sam too is tiny - actually a few pounds smaller than . he can walk on those tiny legs when he feels well - don't you just wonder how those little legs can hold them up? His speech is getting worse - probably for the same reasons you describe - the low facial tone and it is heart breaking but fortunately he does not know any better. he is not able to go to kindergarten because of immune and complex care issues but he is happy and full of zest for the most part. I hope that this list is supportive to you - thanks for taking the time to introduce yourself. Anne Original Message ----- To: <Mito > Sent: Sunday, September 08, 2002 6:00 PM Subject: New to group > > Hi all~ > > Just wanted to introduce myself and my family. I am looking forward to > learning more about all of you. I have two children who are potentially > affected with a mito disease called cytochrome c-oxidase deficiency. > Potentially because after their muscle biopsies, they met most of the > criteria for that disease. , is 4 and will be 5 in early > October. She was born with extremely low tone and we first realized > something was wrong when she was unable to suck. To date, she is still a > little pumpkin. 28 pounds at almost 5. She was g-tube fed until around > 3 and we pulled it when she was about 3 1/2. We wanted to get through the > winter in case she became sick so we could have an easy means of > hydrating her without ending up in the hospital. has now > exceeded our wildest expectations. She can walk, run, etc, all of > course with an extremely wobbly gait, but it is there. Currently we > don't anticipate any learning problems, except for maybe some potential > for some hyperactivity issues...but that's more of my issue than any one > elses. She is very independent and strong-willed. Her biggest issue is > her speech. It is so difficult to understand and sounds so > garbled...especially when tired. I feel sorry for her and it breaks my > heart when her own peers can't understand her. Our middle child, who > just turned 3, is unaffected. After many debates, we decided to have one > more child. The Dr.'s told us this disease is so rare, and because we > don't have a definite diagnosis, it is highly unlikely to have another > child with this disease. Low and behold, joined our family last > November...around 9 months ago. During the pregnancy, I continued > telling anyone who would listen that I thought that this baby didn't seem > right. Movement was nothing like Alyssa, our unaffected child, and > reminded me of my pregnancy with . After my ob. telling me I worry > too much (a different ob. than who had delivered and Alyssa...we > had moved from the town they were born in), I finally convinced him that > I wanted to see a high-risk specialist in a hospital with a NICU. So, I > did...thank goodness. When was born the neonatologist was there > during delivery, and thought things looked great. However, everything > went down hill from there. After trying to get to latch on all > night, by the next afternoon the pediatrician had agreed with me that > there was a problem, so off to NICU. Anyway, after demanding to see > other specialist, was able to come home the day after me. He is not > doing as well as his sister did. While seeming to have better tone than > his sister, he is not progressing as well at all. About 6 weeks ago, he > had his first seizure, which never had and I thought that I was > losing him for sure. He is now rolling over, but not nearly ready to > sit, has no interest in food, refluxes through his nissan, and basically > it just breaks my heart. Last week we drove to see 's old > therapist just to get her input on the situation...she didn't say much, > except she doesn't remember 's arms being so atrophied, but his > legs are stronger than hers. currently has therapy 3 days a week > and we will see 's old therapist quarterly. She's excellent, has > been in the profession for years, and has experience that our current > therapist doesn't have...she's just too far for me to see her on a weekly > basis. > > Anyway, looking forward to being part of the group. Sorry for this long > into letter. > > Jill (mom to 4 1/2, 9 months, cytochrome c-oxidase > deficiency) > > > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2002 Report Share Posted September 9, 2002 Hi Jill: Many things in your post hit me as sounding familiar from my own experiences. I have 4 kids and my 2nd, Zach who is now 10 was the first that I knew to be affected. But like , he seemed to improve with age in some important ways like cognitive function and development. 13 months after he was born my daughter was born. No one had a name for what was wrong and by the time Zach was 4 he seemed to be getting better. The doctors also told us that they doubted it was anything that would show up in a subsequent pregnancy, after all only Zach was affected and not my 2 girls. So Sammy was born and he turned 5 now in May. The sound of familiar footsteps???Yes, I too knew within hours of Sam's birth that he was not well. And from the time he was about 5 weeks old he accumulated symptoms that were more pronounced than Zach's had been at the same age. I learned that my heart could break more times than I thought possible. At the same time, Zach started getting worse - mainly adding newer medical problems. When Sam was 15 months old and Zach was 6 they were diagnosed with the same as your kids (complex 4) but also with complex 1. There complex 1 and 4 are profoundly low. Sam too is tiny - actually a few pounds smaller than . he can walk on those tiny legs when he feels well - don't you just wonder how those little legs can hold them up? His speech is getting worse - probably for the same reasons you describe - the low facial tone and it is heart breaking but fortunately he does not know any better. he is not able to go to kindergarten because of immune and complex care issues but he is happy and full of zest for the most part. I hope that this list is supportive to you - thanks for taking the time to introduce yourself. Anne Original Message ----- To: <Mito > Sent: Sunday, September 08, 2002 6:00 PM Subject: New to group > > Hi all~ > > Just wanted to introduce myself and my family. I am looking forward to > learning more about all of you. I have two children who are potentially > affected with a mito disease called cytochrome c-oxidase deficiency. > Potentially because after their muscle biopsies, they met most of the > criteria for that disease. , is 4 and will be 5 in early > October. She was born with extremely low tone and we first realized > something was wrong when she was unable to suck. To date, she is still a > little pumpkin. 28 pounds at almost 5. She was g-tube fed until around > 3 and we pulled it when she was about 3 1/2. We wanted to get through the > winter in case she became sick so we could have an easy means of > hydrating her without ending up in the hospital. has now > exceeded our wildest expectations. She can walk, run, etc, all of > course with an extremely wobbly gait, but it is there. Currently we > don't anticipate any learning problems, except for maybe some potential > for some hyperactivity issues...but that's more of my issue than any one > elses. She is very independent and strong-willed. Her biggest issue is > her speech. It is so difficult to understand and sounds so > garbled...especially when tired. I feel sorry for her and it breaks my > heart when her own peers can't understand her. Our middle child, who > just turned 3, is unaffected. After many debates, we decided to have one > more child. The Dr.'s told us this disease is so rare, and because we > don't have a definite diagnosis, it is highly unlikely to have another > child with this disease. Low and behold, joined our family last > November...around 9 months ago. During the pregnancy, I continued > telling anyone who would listen that I thought that this baby didn't seem > right. Movement was nothing like Alyssa, our unaffected child, and > reminded me of my pregnancy with . After my ob. telling me I worry > too much (a different ob. than who had delivered and Alyssa...we > had moved from the town they were born in), I finally convinced him that > I wanted to see a high-risk specialist in a hospital with a NICU. So, I > did...thank goodness. When was born the neonatologist was there > during delivery, and thought things looked great. However, everything > went down hill from there. After trying to get to latch on all > night, by the next afternoon the pediatrician had agreed with me that > there was a problem, so off to NICU. Anyway, after demanding to see > other specialist, was able to come home the day after me. He is not > doing as well as his sister did. While seeming to have better tone than > his sister, he is not progressing as well at all. About 6 weeks ago, he > had his first seizure, which never had and I thought that I was > losing him for sure. He is now rolling over, but not nearly ready to > sit, has no interest in food, refluxes through his nissan, and basically > it just breaks my heart. Last week we drove to see 's old > therapist just to get her input on the situation...she didn't say much, > except she doesn't remember 's arms being so atrophied, but his > legs are stronger than hers. currently has therapy 3 days a week > and we will see 's old therapist quarterly. She's excellent, has > been in the profession for years, and has experience that our current > therapist doesn't have...she's just too far for me to see her on a weekly > basis. > > Anyway, looking forward to being part of the group. Sorry for this long > into letter. > > Jill (mom to 4 1/2, 9 months, cytochrome c-oxidase > deficiency) > > > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2002 Report Share Posted October 4, 2002 Jill, Our 7yr old son also has been diagnosed with complex IV mito - cytochrome C oxidase deficiency (COX). Find attached an overview of our journey, which may be of intrest. & Savage ( 7yrs - mito complex IV & - very healthy!) (Queensland - Australia) New to group Hi all~Just wanted to introduce myself and my family. I am looking forward tolearning more about all of you. I have two children who are potentiallyaffected with a mito disease called cytochrome c-oxidase deficiency. Potentially because after their muscle biopsies, they met most of thecriteria for that disease. , is 4 and will be 5 in earlyOctober. She was born with extremely low tone and we first realizedsomething was wrong when she was unable to suck. To date, she is still alittle pumpkin. 28 pounds at almost 5. She was g-tube fed until around3 and we pulled it when she was about 3 1/2. We wanted to get through thewinter in case she became sick so we could have an easy means ofhydrating her without ending up in the hospital. has nowexceeded our wildest expectations. She can walk, run, etc, all ofcourse with an extremely wobbly gait, but it is there. Currently wedon't anticipate any learning problems, except for maybe some potentialfor some hyperactivity issues...but that's more of my issue than any oneelses. She is very independent and strong-willed. Her biggest issue isher speech. It is so difficult to understand and sounds sogarbled...especially when tired. I feel sorry for her and it breaks myheart when her own peers can't understand her. Our middle child, whojust turned 3, is unaffected. After many debates, we decided to have onemore child. The Dr.'s told us this disease is so rare, and because wedon't have a definite diagnosis, it is highly unlikely to have anotherchild with this disease. Low and behold, joined our family lastNovember...around 9 months ago. During the pregnancy, I continuedtelling anyone who would listen that I thought that this baby didn't seemright. Movement was nothing like Alyssa, our unaffected child, andreminded me of my pregnancy with . After my ob. telling me I worrytoo much (a different ob. than who had delivered and Alyssa...wehad moved from the town they were born in), I finally convinced him thatI wanted to see a high-risk specialist in a hospital with a NICU. So, Idid...thank goodness. When was born the neonatologist was thereduring delivery, and thought things looked great. However, everythingwent down hill from there. After trying to get to latch on allnight, by the next afternoon the pediatrician had agreed with me thatthere was a problem, so off to NICU. Anyway, after demanding to seeother specialist, was able to come home the day after me. He is notdoing as well as his sister did. While seeming to have better tone thanhis sister, he is not progressing as well at all. About 6 weeks ago, hehad his first seizure, which never had and I thought that I waslosing him for sure. He is now rolling over, but not nearly ready tosit, has no interest in food, refluxes through his nissan, and basicallyit just breaks my heart. Last week we drove to see 's oldtherapist just to get her input on the situation...she didn't say much,except she doesn't remember 's arms being so atrophied, but hislegs are stronger than hers. currently has therapy 3 days a weekand we will see 's old therapist quarterly. She's excellent, hasbeen in the profession for years, and has experience that our currenttherapist doesn't have...she's just too far for me to see her on a weeklybasis.Anyway, looking forward to being part of the group. Sorry for this longinto letter.Jill (mom to 4 1/2, 9 months, cytochrome c-oxidasedeficiency)Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2003 Report Share Posted June 25, 2003 Hi Penny... First, I understand how hard it is to deal with a toddler in the DBB. Lately, Cole at 15 months has been waking up crying at night. Lastnight this happened and we took the DBB off and instant relief. I think my husband tied the laces too tight, I usually do it. I don't have much advice for you, just good luck at your next appointment. Speaking of....we take Cole to Dr. Jarka too!!! I was so excited when I read that. We started treatment in Oklahoma where we lived up until last Labor Day, but when we moved we had to find a Ponseti trained doctor. Dr. Jarka is the only one in Kansas so we travel there from Wichita every 6 months. We have to pay the $58 office visit out of pocket because she no longer takes First Guard. She used to at Children's Mercy but stopped working from that clinic. But, the drive there and her expertise is well worth it for perfect little feet. Next time you see Dr. Jarka, explain your concerns with the DBB. She's a very understanding lady and we just love her! Great to know there is someone on the list now that I can share ortho stories with. Candy and Cole bi cf, 3/30/2002 > I just joined this group as suggested by someone on another group. > I have a 19 month old boy that has a left club foot. He was casted > every week for several months and then he was put in a boot and > bar. He wore the boot and bar 23 hours a day for a few months. Now > he is supposed to wear the boot and bar at night, needless to say I > have been a bad mom and have not made him wear it. It is hard to > make him as he sleeps restlessly and wakes in the night. It is time > for a check up and I have dreeded going because in our last visit > the DR told me that he might need to have surgury to move the tendon > over so that his foot will not turn in. We have been fortunate and > not had to have surgury. It was suggested to me that he may need to > be cast again, I was unaware that this was an option. > I am in the Kansas City MO area and our current DR is Jarka. > If anyone has suggestions for me I am here to listen. > I put in the shoe last night and he slept good, but this > morning he had red spots on his foot, so I know that that needs > adjusting, but our insurance does not cover the shoes. > > Penny Quote Link to comment Share on other sites More sharing options...
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